Young and Deathly Ill

Delivering effective palliative care to children poses special challenges.

The goal of palliative care—to relieve physical and psychological distress—is the same for pediatric patients as it is for adults. But several factors complicate treatments for children. “We often have to deal with considerable uncertainties in treating children because we don’t have the same amount of information about pediatric diseases as we do for adults who are dying,” says Patricia O’Malley, medical director of the pediatric palliative care service at MassGeneral for Children. “And kids may not report their pain because they think it will add to their family’s distress, or they may feel their pain is a punishment because they have done something wrong.”

It’s also complicated to get a true picture of the severity of a child’s symptoms when you have to depend on a parent’s interpretation. Joanne Wolfe, director of pediatric palliative care at Dana-Farber Cancer Institute and Children’s Hospital, is analyzing the results of a trial in which children with cancer used a tablet computer’s touch screen to answer questions about how they felt. Prior to weekly clinic appointments, nurses, physicians and social workers got reports of children’s answers, and everyone on a patient’s care team received e-mail alerts when the child recorded significant symptoms. The hope, Wolfe says, is that oncologists will become more attuned to easing symptoms and improving quality of life if they get frequent, direct feedback.

“From the kids’ perspectives, we found there was a high prevalence of pain and fatigue,” she adds. In one case, a high school senior with cancer wrote that she didn’t know how she’d find the energy to cross the stage at graduation in a few days. “We got that e-mail and were able to treat her so she could graduate.”